I got another diagnosis today. And when I posted about it on Facebook, someone joked that its almost like an “Ailment of the Month Club”. And honestly, I get it. It does seem extreme.
I’ve been accused of being a hypochondriac, constantly looking for more and more issues to have. And I’ll be honest, It does look like it.
Because right now my list of labels is already really long.
Starting with my mental health/brain stuff, I have ADHD, BPD, CPTSD, plain old PTSD, (and as part of that depression and anxiety), self diagnosed likely autism.
Then I have Ehlers Danlos Syndrome, Fibromyalgia, Hashimotos thyroiditis, IBS, POTS, RCPD (no burp syndrome), GERD, TMJ issues…
Then my latest two- idiopathic intracranial hypertension diagnosed earlier this month, and, officially diagnosed yesterday, asthma.
On top of that, my rheumatologist suspects ankylosing spondylitis and we’re in the process of testing for that, and I suspect sjogren’s and I asked for a blood test to check for myasthenia gravis. Additionally, I have an endoscopy/colonoscopy/gastroscopy scheduled for this summer, and a doctor wants me to check to see if I have hyperadrenergenic POTS.
Common Comorbidities
With all that list… it does sound ridiculous. And the fact that I’m being evaluated for 5 more things right now on top of my extremely long list makes me question myself. Am I making a big deal out of everything? Am I attention seeking? Is 13 diagnoses not enough that I need to look into another 5? Is it not enough for me to (physically) have ehlers danlos syndrome and hashimotos? Why have I sought out more diagnoses?
Or… am I living life so badly that I just keep getting sicker and sicker and this is a sign that I need to take care of my body better and go on a diet and lose the weight that is causing all my issues?
But then I try to think about it seriously. To look at the facts.
And then I remind myself of a few things.
First off, I’ve been through a lot of trauma in my life. As studies have shown, when you go through trauma, especially as a child, you’re much more likely to develop both fibromyalgia and a variety of auto immune diseases. So that already explains a lot. Of the diagnoses I have or am looking into, hashimotos, ankylosing spondylitis, sjogrens, and myasenthia gravis are all auto immune diseases, so just my childhood trauma makes sense to have caused this. So it isn’t I have CPTSD and this and that, Its that I have this and that and that because of my CPTSD.
Additionally, since Ehlers Danlos Syndrome causes the body to make faulty collagen, and collagen runs throughout the entire body, it makes sense that there would be lots of syndromes and health issues because of the EDS, not in addition to. For example, POTS is found in more than half the population with EDS, as are other types of dysautonomia. TMJ issues and GERD and IBS are also very frequently found together with EDS simply because the faulty collagen causes those parts of the body to malfunction.
My latest two diagnoses, idiopathic intracranial hypertension and asthma are frequent comorbodities (get diagnosed alongside) of EDS, specifically hypermobile EDS, and while they don’t know why IIH goes hand in hand with EDS, there are many causes of asthma, and since the bronchial passages and other parts of the lungs are made of collagen, faulty collagen makes these more likely to collapse, causing asthma.
Additionally, while they don’t know the exact cause of auto immune diseases,
Getting Sicker and Sicker?
Then there’s the aspect that I am getting more and more diagnoses, so does it mean I’m getting sicker and sicker, and maybe I’m causing it?
So first off, Ehlers Danlos Syndrome is a degenerative disease. As is ankylosing spondylitis. So it gets worse as you get older. Additionally, the more injuries you get with EDS, the more likely you’ll get additional injuries, and it goes downhill from there.
So yes, things started getting worse about 7 years ago, and then 5.5 years ago after a fall during ice skating, it got progressively worse, since I have permanent damage to my glutes from that. Weight gain also makes it worse because it puts more pressure on the joints. Fortunately, physical therapy has stopped it from getting worse, and my pain levels from my EDS are lower than they used to be. Swimming also helps, and that’s why I’ve been trying to do that regularly.
POTS I’ve had my whole life, I just didn’t know it was called that. I went to the doctor from unexplained blacking out already back in high school. And I assumed I had hypoglycemia already in high school, but it probably was connected to POTS.
Asthma I’ve also had my whole life; I was first diagnosed with exercise induced asthma by my father on a hike in Bryce Canyon as a teen. The cold air and the exercise combined to make it even worse, making me have my first asthma attack. And apparently the constantly being short of breath that was attributed to my being out of shape was asthma, not just from lack of regular exercise.
Additionally, there are many auto immune issues that are frequent comorbidities of EDS, and while they don’t know what causes auto immune issues, I read that high levels of inflammation in the body may trigger these to start, and frequent injuries from EDS can cause such inflammation, but they’re still looking into that (and I can’t find the source where I read that).
The one thing that did get worse was the IIH. IIH is unknown in origin (that is why it is called idiopathic, meaning reason unknown) but it is more common with weight gain, and I gained weight a bunch of years ago when I went on psychiatric medication. And the IIH causes other health issues such as vision issues, which is why I’m looking into myasenthia gravis (which could be causing my focusing issue, which apparently is the real reason my vision has been wonky, not IIH.
So yes, the IIH is worse because of my weight, and the weight gain is a result of my mental health issues, and that is something I can do something about, so reluctantly, I am looking into gentle sustainable ways of attempting to lose weight.
And as for the mental health issues getting worse… All I can say is I had them my whole life and I was in denial about them, until both my marriage and challenging children pushed me over the edge until I collapsed, spiraling down to an abyss, but fortunately, with medication and therapy, I’ve been climbing out and am in a much better place mentally.
And as for some of the other things I’m looking into, I didn’t just develop these. For years there have been unexplained symptoms I’m having, such as extremely dry eyes and mouth, causing other health issues (vision issues, cavities, etc…) and really high CRP that they haven’t been able to find a source. So further testing I’m doing is to attempt to find the reason for these issues, so we can deal with them.
So now what?
I know my critics probably will still be on my case about this, still accusing me of hypochondria, looking for issues, etc.
And my brain won’t shut up either. I have an extremely loud inner critic and its favorite thing to tell me is I’m making a big deal out of everything. So that internal voice criticizing me for searching for answers won’t be going away any time soon, but when I’m being all self recriminatory, I’ll remind myself of everything that I wrote in this post. That it isn’t this and this and this, it’s this and this because because of this.
Will I do anything about it? As I mentioned, I reluctantly decided to try to lose weight. However, since I know yo yo dieting is far unhealthier, and that most diets are not sustainable, and therefore you go back to your previous weight and higher once you get off the diet, I decided that I won’t diet. I decided I will try to make some sustainable lifestyle changes, like trying to buy whole grains instead of refined grains. I will try to add more veggies into my diet. I will try to switch to lower glycemic carbs overall. And I will try to eat smaller, more frequent meals, that are higher in protein but lower in carbs and maybe fats. I’m not banning any foods, but I will try to be conscious of portion size and listening to my hunger cues.
Will it work? I dunno. But that is what I’m willing to do. I was 137 kg last time I weighed myself, but at the doctor yesterday I was at 135 kg. Just normal fluctiation or weight loss? I dunno. But we’ll see.
